Forum:
LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Just out of curiosity, has anyone later been diagnosed with breast cancer after an earlier LCIS diagnosis? I was wondering if you would talk about your BC diagnosis: ILC or IDC? In the same breast or opposite breast as LCIS? How long after your LCIS diagnosis? How old were you at LCIS dx and how old when upgraded to BC dx? How was your LCIS treated prior to the bc diagnosis? Or really anything else you might want to share.

I would also be curious to hear from anyone who had a biopsy result of ALH/LCIS but was upgraded to bc after excision or mastectomy or who had a prophylactic mastectomy only to find you had occult cancer.

I'm still struggling with LCIS treatment decisions and trying to decide about BMx, so I am just curious about how many of us were upgraded to a cancer diagnosis after first having LCIS.

Well--not quite what you're looking for but I had ALH 10 years ago, then DCIS in 2016 (left breast) and IDC in 2018 (right breast). I had excisional biopsy/lumpectomies with all of them. I was 58 in 2016; 60 in 2018.

Thanks so much for sharing your story Ingerp. I figure ALH/LCIS is really a continuum, so I am quite interested in what you experienced. The literature says that LCIS is a risk factor for cancer in either breast and your story confirms that can indeed be true. So... your ALH diagnosis was when you were approx. 50 years old? And then it was about 8 years before your DCIS was discovered? This is also interesting to me as I struggle with my treatment decisions, ie. continued 6 mo. imaging, possible anti-hormonal drugs, or BMx.

May I ask were you offered and did you take any of the anti-hormonal drugs after your ALH diagnosis? Did you move to a 6 month schedule of imaging? Again, thanks for your response.

My mother died from breast cancer at the age of 33 and I was 2 yrs old at the time.My older sister was diagnosed with DCIS at the age of 56! My maternal grandmother died from breast cancer at 72years of age.

ThroughOut my life, I had 14 breast biopsies before I said enough is enough! In 2012, after being told my biopsy showed that I had atypical lobular and ductal hyperplasia, I opted for bilateral prophylactic mastectomy. When I got my pathological report, there was LCIS everywhere in both breasts!! My surgeon told me I was a few months away from invasive breast cancer. Nothing showed on mammography except for a few suspicious microcalcifications. LCIS did not show up and it never does!

I have never been happier with my decision. I just had revision of my implants from textured to smooth and they are awesome!!

You have to decide what feels right for you. I recommend talking with your doctor and weighing your options. Second opinion is also a great thing!

Light1--yes that was my timing. I was not offered any follow-up treatment after the ALH other than regular annual mammograms. Also no anti-hormonals after the DCIS because it was ER-/PR-. I know this is going to sound weird but I honestly can't remember if I was getting annual or semi-annual mammos after the DCIS, although probably annual. I know that women are interested in follow-up schedules, and that they vary quite a bit. I believe I'll see my MO every six months as long as I'm on the AI, but my RO orders the mammos and those will be annual going forward. I cut my BS loose after my last surgery. She said I could keep seeing her (possibly every six months?) but also that I didn't have to. I didn't see the need since I'm still seeing my MO and RO. I only recently got genetic testing--really only because if it had come back positive for mutation (which it did not), I'd have been put on an every-six-months alternating mammo/MRI.

Hi Nancy. Thanks so much for weighing in here with your story. I am much newer to this than you - just two years and three biopsies out, showing papilloma, ALH/LCIS, radial scar - the basic “busy breast” scenario. I don’t know how you dealt with the anxiety of 14 breast biopsies, especially with your family history! I have been considering a BMx, but am not yet sure about it. Also still considering anti-hormonal drugs prob raloxifene) but have some other health issues which may be a contraindication. My BS says I have time to decide, so it is helpful to me to hear other women’s experiences. Thanks again for sharing!

Ingerp, thanks for adding more details. I was a little surprised about your DCIS being hormone receptor negative. Is that uncommon? When I was diagnosed with the ALH and LCIS a couple of years ago I was offered anti-hormonal drugs as prevention despite the fact that no testing was done to determine the hormone status of my biopsy samples. I questioned the doc about that and was told that they don’t test the LCIS since it is almost always hormone receptor positive. I guess I just assumed that DCIS was also mostly hormone receptor positive

I did not have a previous LCIS diagnosis, but LCIS was also found on same biopsy when I was diagnosed w ILC earlier this week. It showed up as a distortion on 3d mammo and then MRI shows another possible area. That said I also have adh, alh and fea in that same side. I am 46. I have family history but theirs was all IDC

They also found my LCIS when I had surgery for ILC. They say LCIS is very rare and only about 20% of those with LCIS go on to develop BC. How do they know it's rare??? I had never had biopsies or any breast problems in my life. It doesn't show up on imaging. So how do they know how common or uncommon it is?

Melissa --- I would never have guessed that. Now I wonder if my sister also has LCIS that hasn't developed into cancer. I wonder if LCIS runs in families. I have a cousin and an aunt who had BC --- I did the 8 gene test which was negative. It's such a puzzle. Kind of fun to research.

I had 3cm of what was biopsied as Lobular neoplasia in my right breast (6cm DCIS in my left) - however after Bi-Lateral Mx a microinvasion of IDC was found in the left (so moved my staging to 1A) .....so if I had never done a bi-lateral mx God knows what would have happened..because it was encouraged to just do a uni for the left breast and a 6mos watch and wait for the right...but I said - no take it off I don't want it there.

Hello Tring2staypositive. So sorry you are dealing with this recent ILC diagnosis. Thank you for taking the time to share your story. It sounds like you have "busy" breasts as well, with lots of things going on in there.

While ILC is not as common as IDC (only accounts for 10%-15% of bc?) it is more common in women with LCIS than in the general population. It seems that some of the genetic mutations (such as the ones that lead to lack of e-cadherin) that lead to LCIS can continue to mutate and become ILC. Of course, LCIS can also commonly be associated with DCIS/IDC. It just seems like breast with atypia are "fertile" ground for other changes that may lead to bc of one kind or another.

Thinking of you and hoping you have a doc/team you like and feel confident with.

Hi Ingerp. I've read a little more about DCIS since I posted, and I think there must be more variety in terms of hormonal recepetor status, grade, etc. than I realized. Thanks for your insight.

I guess what I find unusual is that almost all LCIS is treated the same (with possible exceptions of pleomorphic or florid variants) and assumed to be hormone receptor positive without any testing. Most LCIS women are offered anti-hormonal drugs as prevention, and it seems few of us even know if our LCIS is ER+/PR+.

Hello Peacetoall. Thanks so much for sharing your story, especially the bit about the contra-lateral mastectomy that likely saved you from something far worse. It's a cautionary tale to those of us with breast neoplasia - we never really know what's still lurking that the biopsy didn't remove and that not knowing is a source of anxiety for many of us.

I was 40 when I had a excisional biopsy with ALH, then lumpectomy revealed LCIS. I was offered Tamoxifen then but declined and went with 6 months mammograms and then yearly.

Now 48, had another biopsy with ILC. Had a DMX on 5/2019 and now prescribed Tamoxifen for 5 years which I will take this time. It was small .6cm so caught early, not clearly seen on Mammo or US, just told it looked suspicious and was given the option to biopsy or wait 6 months. I am happy I chose biopsy. Also happy I requested a double mastectomy because “healthy” breast showed atypical cells and ALH.

hi...I am sorry you have had to join this club. I was diagnosed with ALH 9 years ago in the left breast. I chose against the meds and my Dr agreed with me. I was 30 when diagnosed. I was put on the intensive surveillance train. Mammogram plus ultrasound.. visit with Dr...Mri....visit with Dr. Now it is 3d mammogram, Dr.visit, and mri. I have since had 6 biopsies and 2 excisional surgeries and am about to have a 3rd excisional surgery on 8/5. It is very very hard to live in limbo. we say that we live between scans. Then life pauses kind of.... for whatever amount of time it takes to get a clear report. Then we live again. I have found that There is not as big of a support system or understanding for those individuals who are living with high risk, high anxiety, constant scanning, and what amounts multiple lumpectomies without a diagnosis of bc. I am seriously considering a bilateral mastectomy. My lifetime risk is 47% and I just don't think I can face decades more of biopsies and scans. It is the hardest decision... I grinned at your description of "busy" breasts, The Breast radiologist recently called mine "hyper" and "likely to develop cancer at some point". The hard part is not knowing whether my breasts would settle at some point and maybe I would be fine..what if I have amputated parts of my body unnecessarily? I hope you have a great Dr....I asked mine If she had a crystal ball two weeks ago. that would be helpful😄. Good luck to you as you navigate this journey.

light one candle, here is my story :) I was diagnosed in 2008 with IDC had a lumpectomy and radiation followed up with Arimidex * 5 years. Approximately one year after the surgery I moved to New York and found a new breast surgeon who insisted that I have an MRI. The MRI showed possible cancer in both breasts, had bilateral biopsies and pathology showed pleomorphic lcis and classical. I then consulted with a lcis researcher and BS at Sloan-Kettering and I told her that I wanted bilateral mastectomy and she said please don't do that you only have a 7% chance of ever having a reoccurrence. So I didn't and I was monitored every 6 months and of course I was already on Arimidex. I had many more biopsies fortunately they all came back as lcis. I finished my 5 years of Arimidex and was off for three years until 2016 when I was diagnosed with ILC :( at this time I did have a bilateral mastectomy and the non-cancerous breast did show significant lcis and so did the cancer side. It really sucked to be part of that 7%! I am in my 50's.

Hi tjohnson1971. So sorry that you were among those women whose LCIS heralded later breast cancer. How fortunate that you chose the biopsy rather than the wait-and-see option though because it sounds like your ILC was found early. I think you made a good decision regarding the BMx because I understand that LCIS and ILC are often multifocal and also are often to be bilateral. I appreciate you sharing your story - thank you!

Hi Rshep9101. Thank you so much for sharing your story. I was struck by how young you were (30!) when first diagnosed with ALH and with how many biopsies you have endured through the nine subsequent years. No wonder you are considering BMx.

I was 64 when diagnosed, so a whole generation older than you, and have been doing the six-month imaging since then. I was only diagnosed two years and 2 biopsies, plus one excisional biopsy ago and already the constant surveillance and worry seems like it is just too much sometimes. I am weighing taking an anti-hormonal drug vs BMx. I would really like to avoid bc if possible. Just doing surveillance doesn't strike me as proactive enough.

Best wishes on your next surgery on 8/5. I will definitely be sending good thoughts you way.

OG56, thank you so much for sharing your story! So sorry to hear that you have had to deal with bc twice - IDC and ILC. And you took the anti-hormonal drugs that are recommended for prevention and still developed a new cancer -- that really sucks!!

I was struck by your MSK docs recommendation against BMx. Of course, that sounds like it was several years ago, maybe 2009 or 2010? Perhaps more is known now about LCIS risk? The latest info that I see says that women with LCIS have a 1%-2% risk per year of developing bc. And pleomorphic LCIS is considered even more problematic than classical LCIS. Of course not every women wants to consider a BMx for a high risk condition, but I still think it should be every patient's right to make that decision for herself.

Having ALH and classic LCIS, my own risk assessments have varied but have all been considerably higher than 7%, though I take them all with a grain of salt. My Mayo Clinic risk score is about 47% over 15 yrs. from my initial diagnosis, so I am still struggling with my decision regarding prevention. Stories like yours are interesting to me as a grapple with my choices.

I was diagnosed with a papilloma and FEA (flat epitelial atypia) at the age of 42, last year. Only four months later I was diagnosed with a new papilloma in the same breast, this time, no atypia was found. I had an Mri, mamos and us. I opted for BMX. I know it is overtreatment, no cancer in my family of any type. I am thin, don't smoke, don't drink. I only don't do sports and I took bcp for twenty years, I wonder if the bcp has something to do with the atypia..

After the BMX, the final report came with radial scar, adenosis and other benign but risk findings that didn't show up in the Mri or mamo and us.

I am at peace with my decision, the result is amazing. I have done everything I could to stop my chances of future bc. Only time will tell if I did the right thing, but at least I have peace. I wish you all the best with your decision

Thank you, Stherye, for sharing your story and your words of encouragement. Being at peace with whatever decisions we make is perhaps the most important thing. So glad the results of your BMx were good. Thanks again!

Hello Light1candl and thank you for starting this thread! After seeing a new group of microcalcs on my mammogram, I was referred to a breast surgeon for consultation and diagnosed with LCIS after a stereotactic biopsy in Feb 2018. Upon finding the LCIS, along with some sclerosing, my surgeon wanted to do a 'lumpectomy' because she felt the area looked suspicious. After lots of run around trying to schedule appointments and coordinate information, files, etc. I went to a new facility where the breast surgeon was more conservative and said it was not unreasonable to just monitor the area rather than have the lumpectomy. You see, I too had busy breasts for years, just as my mom and sister do, but other than a great aunt on my father's side, there is no other bc in my family. So I decided to wait. Then friends and family started worrying for me, including my daughter, suggesting I get the lumpectomy. After surgery I was diagnosed with 2.5mm ILC and a few kinds of LCIS. My surgeon said the standard course now is not to re-biopsy for the LCIS. I had radiation, and am not on tamoxifen and hoping to switch to an AI soon.

No one knows the reasons or mechanisms that may work for one and not the other because IMO there are too many factors that can increase an individual's risk. I had gained weight during perimenopause, was under a good deal of stress trying to do it all, sat all day, wasn't exercising nearly as much as I always had in the past, and had been put on anti-anxiety and HRT. Personally, I am convinced that the combined HRT essentially fueled the LCIS that was already there. Being overweight never helps but especially since I have a history of estrogen dominance (endo, etc) and had never been overweight in the past. I have changed my life as much as possible, greatly reducing stress, slowly trying to get the weight down, exercising vigorously, eating healthier, getting more rest, etc.

Before my diagnosis I was exhausted, and that was another yellow flag the universe was waving at me. You definitely have to know your body and make the best decisions for you. Just be sure to take care of you, or you won't be able to take care of anyone! ((hugs))